與你同行：父母教養自閉症兒的心路歷程之敘事探究

Abstract

本研究的目的為探究父母在教養自閉症兒成長過程中的心路歷程，以及在過程對於親職角色的分配與協調之相關經驗。研究者採用了敘事研究法來進行資料的蒐集與分析，希望透過研究參與者的生命故事敘說以及研究者對故事的理解與詮釋，從中瞭解父母在教養自閉症兒的相關經驗。因此，以立意取樣的方法邀請一對在馬來西亞育有一位自閉症兒的父母成為本研究參與者，並經由半結構式的個別訪談與伴侶訪談蒐集父母在這歷程裡的相關生命經驗。研究者將本研究結果分為兩大部分：首先，採取「整體—內容」分析法，以第一人稱的方式呈現父親與母親個別在教養自閉症兒的生命經驗故事；並以第三人稱的方式呈現父母共同在教養自閉症兒歷程裡在親職角色上的分配與協調之相關經驗。

另，採取「類別—內容」分析法貫穿替代文本裡的不同主題，分別呈現父親與母親在教養自閉症兒成長階段裡的心理變化、面對的挑戰與因應方式、擁有的支持系統與資源、父母在親職角色上的分配與協調，以及彼此間日常的互動與方式與協調。 綜合上述，本研究發現茲列述如下：（1）父母在教養自閉症兒的歷程中心理上難免會出現一些防衛機制，而在這歷程裡父母的內在與外在將經歷不同階段變化的調試歷程，同時基於性別與親職角色的不同，雙方所經歷的內在感受也會存有一定的差異；（2）父母雙方在這歷程裡主要面對的挑戰包括欠缺對自閉症的瞭解、醫療與治療的相關問題、生活的調整、父母各自原生家庭成員的涉入影響、自閉症兒的學業與生涯規劃、社會資源的匱乏等；（3）父母採用的因應策略包括問題焦點的因應策略，當中採用最多的方式為主動因應，以及情緒焦點的因應策略，當中採用最多的因應方式為尋求情緒性的社會支持；（4）雙方在親職角色上的分配與協調主要以分工與共親職為主，固定或一致性的親職角色分配對自閉症兒的行為會有直接的影響, 而且雙方的共同合作、溝通、信任、以及相互陪伴、鼓勵與支持彼此的程度亦增強其效益。最後，依據本研究結果與結論，對未來的研究、相關的專業人士、以及自閉症兒的父母提出具體的相關建議。The purpose of this study is to explore the psychological process of parents in raising a child with autism, and how they coordinate their parental roles throughout the process. This study adopted the narrative research method for data collection and analysis, hoping to acquire through the narrative stories shared by the research participants and the interpretation and analysis of the story by the researcher, an in-depth understanding of their relevant experiences as parents in raising a child with autism. A purposive sampling method was used and the participants selected for this study were a couple from Malaysia whose child was diagnosed with autism. Semi-structured interviews were conducted to understand the parents' life experiences along the child-raising process. The main features of outcome in this study are as follows:

First of all, the researcher adopted the “holistic-content” analysis to present the respective life experiences of the father and the mother in raising an autistic child from a first-person perspective. A third person perspective method was also used for presenting their interactive experiences and the allocation and coordination of parenting roles in the process of raising a child with autism.

Secondly, the “categorical-content” analysis method was applied to identified thematic changes in the psychological process change of the father and the mother in raising an autistic child, the challenges and coping methods, the support system and resources, the relationship between husband and wife, and also the assignment and coordination of parenting roles.

The findings of this study are summarized as follows: (1) In the process of raising a child with autism, there were times when defence mechanisms were inevitably triggered, and throughout the process, parents might experience both internal and external adjustments at different stages of change. At the same time, parents might have distinctively different feelings due to their differences in gender and parental roles. (2) The main challenges that parents faced throughout the process were the lack of knowledge about the autism, medical and therapy related issues, adjustments in life, the involvement of the father and the mother’s primary family members, issues related to educational and career arrangements, the lacking of social resources, and others. (3) The primary coping methods of the parents were problem-focused coping strategies, of which the most frequently used were the active coping methods, and the emotional-focused coping strategies, mostly for seeking emotional social support. (4) The distribution and coordination of parenting roles of the father and the mother were mainly for roles sharing and co-parenting. A fixed and consistent parenting roles assignment had direct impacts on the behaviour of the autistic child. Additionally, the cooperation, communication, trust, companionship, encouragement, and support for each other also enhanced the effectiveness of parenting roles.Based on the research findings, this study also offered suggestions for future research, relevant professionalism and parents who have children with autism.